Insights From a Renaissance Guy and Polymath Who Has Stage IV Melanoma Cancer

Day -2 – About Halfway There October 4th, 2011

One year ago yesterday, Linda and I were in Roses, Spain, having the best meal experience of our lives under the personal care of Chef Ferran Adria and his now closed (but still worshiped) el Bulli Restaurant.

It was a lunch event like none other, involving over 35 course, meeting four new foodie-friends-for-life, and it took a mere seven and a half hours (and ended early only because our prescheduled taxi service was getting impatient). And the wine pairings were out of the world – perfect when sipped with a bite of the paired food. Though, Ali (one of our new friends) and I did more than sip our way through a fabulous Alvaros Palacios 2004 Priorat.

As I sit here tonight at the National Cancer Institute in Bethesda, Maryland, working my way through dinner – consisting of peanut butter, jelly, and cream cheese in a low carb tortilla, and needing frequent enough sips of water moisten each bite enough to prevent me from choking on the dryness (since I have virtually no useful salivia production left at the moment), I can’t help but wonder at what a bizarre but still amazing year it’s been. Those of you who know me know I enjoy exploring cuisine and culture – from eating guinea pig in a hole in the wall in Quito, Ecuador, and street food in Fiji and Kowloon, to enjoying the cuisine of top chefs in New York, Hong Kong, and Boston. And yes, even enjoying fried butter at the state fair.

I see my salivary problems (and I have been told that those will be accompanied by loss or change of taste) will last for some time (in addition to the three months of neutropenia). But in adversity, there’s challenge, and being a devout experimenter in the kitchen, I am sure I can come up with some foods that will overcome my limitations and provide both enjoyment and education, once I’m physically able to spend time concocting. The time spent recuperating will also give me a chance to figure out how I might want to change my approach to cuisine (which in the past was to treat it as a visual as well as olfactory art form) in use in the fine art food photography I had started work on last year.

I lead in with the above as a sort of precursor that I’m doing about the same as last night and don’t have much more to say.

I am now totally neutropenic – with nary any neutrophils left to count in my blood. Other symptoms from yesterday persist: Dry mouth, swollen jaw, slight tiredness, and – how to politely put this – intestines that are a bit more aqueous than they should be. But all those are under control.

Considering I just went through another two rounds of total body irradiation (TBI) today, that’s not bad at all. No sirree. I’ve been informed that I’m not the first to have charged through the first six days into the treatment so well, and that folks here remember two other prior patients similarly bypassing the most common and debilitating side effects. The usual trend tends appears to be towards a lot more unwellness early on and then staying that way for the course of treatment and beyond.

So please cross fingers and knock on wood for me some more that I can buck the side effect trends further after tomorrow’s final two doses of radiation. The side-effects induced by those two final treatments will not immediately appear, and might take a few days to manifest. Again, all I can do is wait and see what happen, and hope for the best combination of events (and ask the same of you).

For a recap, Day -1 (tomorrow) is the last day of radiation. Day 0 is, well, THE DAY. It’s when I get my billions of TIL cells injected into my system. I have a carefully thought out music playlist created (with some help from my friends) that I will play to help encourage them to hunt and kill all those nasty growing melanoma cells in my body. I hope to publish that on Thursday before I start IL-2 later in the day, as I understand that once IL-2 starts I won’t be in shape to do much of anything at all for five days.

7 Responses

We’re rooting for you here & sending you lots more hugs (big, manly bear hugs from Trent) although neither Trent (O+) nor I can give blood until they figure out the mad-cow stuff. To NED!

October 5th, 2011 at 02:01Barbara Leary Says:

Somehow reading your blog today I had the Chumbawumba song pop into my head:
I get knocked down
But I get up again
You’re never going to keep me down
To NED!

October 5th, 2011 at 02:38Natalie & Bruce Says:

Your Hawaii Aloha support team is here, full of love, hugs, and positive vibes. We’ll continue to support our Hawaii Blood Bank as well. To NED!

October 5th, 2011 at 07:37LaDonna Says:

to NED!

Hugs and lots of love!

October 5th, 2011 at 10:36Cecil Berry Says:

To NED, Jake. As far as blood is concerned, I donate all the time and Sue’s job is sucking blood for the Red Cross and donations are down. Less than 1% of the people give blood regularly, but thank God for that 1%.

Jake, glad to her you are hanging in there and keeping positive. I’m glad you have the CD ready to visualize your body slashing and killing all signs of the nasty cancer.

Sorry, but the visual of no saliva and eating a tortilla and peanut butter made me just about choke too! You’d think they’d put it all into a blender so you could at least drink it!

Carry on Cancer Warrior!

Oh, and yes, I am going to find out where I can donate blood this week :)

Hugs and Love,

Cynde

October 5th, 2011 at 17:09Carolynne S Says:

Jake, I read your blog everyday and I am amazed at how well you are holding up to all this. I send good vibes your way daily, continue to stay strong and keep fighting, you are truly an inspiration!

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About

This blog started as a place to explore the pursuit of parallel, varied interests in the vein of a Renaissance person in light of society's demand for specialization, but my diagnosis of cancer - malignant melanoma - in March 2011, has changed all that.

For now, this blog will deal with an exploration of how cancer affects one's life and perspectives, as well as share the voyage through diagnosis and treatment, hopefully with a positive outcome somewhere down the road.